12/31/2005 New Year's Eve

I added to the page Theo's photo with Santa. We went to have the picture taken following his doctor appointment on December 21 (Winter Solstice). He was so calm and peaceful that day.
Our Christmas was quiet but nice. We were very sad over the holiday. I am really glad it's over. For me, it wasn't so much this actual Christmas holiday, so much as how sad I felt knowing that future holidays will never come to pass. There will be no more Christmases with Theo and so much that I hoped for and looked forward to with his birth will not happen. All the tree decorating, present opening, cookie making, driving around seeing the lights, all the family traditions that we won't be starting with him. Thinking of all those things that we'll never do together made me feel so sad and hurt and empty inside.
We did have a small tree this year and my mom and grandmother brought lots of nice gifts and so did my dad. Theo got lots of cute, cuddly outfits and a new quilt to keep him warm and new books for us to read to him. It was good to have my mom and my grandmother here. We had Christmas dinner and rode around to see the lights on Christmas night. Theo fell asleep on the car ride--he loves to ride in the car. He for sure knows that lots and lots of people love him and that's all the gift he really needs.

Tonight we are planning on staying home with him and bringing in the New Year with him at midnight. He is almost always awake at that hour and we plan on toasting him and giving him the first kisses of 2006. We'll have some champagne and he will have his formula since his last feeding of the day is around midnight. He did get tastes of sugar, honey and chocolate syrup over the holiday--we rubbed a little bit of each on his tongue. He didn't have much reaction to the honey but smacked his little lips over the sugar and the chocolate. I couldn't really tell whether he liked it or not, but at least he got to try some tastes on his little tongue.

I really appreciate all the supportive comments I have gotten from people on email and on the blog about my last post regarding the attitudes and reactions of others to terminal diagnoses and death in general. The support from people who care about us and who have had common experiences, whether with dying parents and loved ones or with struggles with their children with disabilities, is so helpful to me. I am reading several books right now, each a little different, but all having to do with dealing with grief, bereavement and loss, and they all speak of how crucial it is in these situations that the bereaved or grieving persons are not alone, how much the support of others determines how well they deal with the loss or tragedy. Knowing others care about us, empathize and sympathize with us, makes me feel less alone, lessens the pain a little bit. And I know that it will only get worse for us before anything gets better. I know that there will be a time when I won't be able to imagine it ever getting better at all. We're not there yet. I am not looking forward to that time at all, but I am trying my best to be as prepared as I can.

I am slowly I think coming to a place where I am beginning to accept that brain tumors that cause irreparable brain damage and ultimately death--and other tragic things like disasters, sickness, accidents, violence--are not things that God can intervene in--or otherwise He (or She or the Universal Spirit or whatever you call the Divine) would. If I don't believe that, then I can receive no comfort at all spiritually and I don't believe that I could get through this, and all the days that are to come, on my own, without feeling that I can recieve help from some higher power. Harold Kushner the rabbi who wrote Why Bad Things Happen to Good People (and whose son died from a progressive, terminal disease) writes that can believe one of three things about God---that either 1) He is all powerful and sometimes chooses to intervene sometimes not, 2) we deserve what we get and God allows those bad things to happen to us, or 3) there are some things God can't control, things that are subject to laws of nature. Which, in Kushner's view, God created as unchangeable for good reasons--like gravity is a good thing because it holds us all on the planet and keep everything in place, but doesn't get reversed to save a child from falling off the second story balcony. All the things we are taught to believe, if we pray hard enough, if our faith is strong enough, that God can do anything, that nothing is impossible, all those things only set us up for heartbreak and bitterness when they don't come true. Those things cause us--cause me--to bargain with God, to make promises (if only my child will be healed I will do this or that) which is just ridiculous becuase if God was going to do something why would He need to extract some promise from me to do it? To beg God, which is also useless. Those kinds of beliefs cause us--cause me--to only feel abandoned, cast aside, unworthy, alone, angry and then guilty for being angry. Those beliefs cause us --me--to think that maybe it is my fault--maybe I didn't have enough faith. Thinking which then leads to the possibility that the unfaithful are then responsible for teh tragedy out of their lack of faith. I am not responsible for Theo's tumor and brain damage. I would do anything to save my baby and take away all the hurt that he has been through over these past four months. I can hardly believe it's only been four months--it feels like a lifetime. But those kinds of beliefs are useless and dangerous and harmful. And very, very hard to get past. Even when intellectually, I know better. Emotions and desperation have considerably more pull than intellect when your baby's life is at stake and being threatened. And when those kind of beliefs are reinforced by people around us, it only makes it more difficult to resolve feelings of guilt and inner conflict. Do you know that a woman at my job--who I am not at all close to-- actually told me that perhaps it was my doubt that was keeping my baby from being healed? How someone could say such a thing to another person going through the pain of a child's illness and impending death, I can't even imagine doing such a thing. Anyway--I am trying to come to a place of peace, where I can be comforted and strengthened by Spirit. Just my writing all this down tells me that I'm not quite there yet. But the most positive thing I think is that I really believe that my negative feelings are comiong from me, from residual teachings of my childhood that are not serving me well at all now at this most devastating crisis of my life and that behind all these feelings is something else. I think that there is peace and comfort from a Source greater than me and when I am able to resolve my own inner conflict, it will be there for me. Indeed, I am sure that that Source is helpign through all the conflict and searching and confusion that I have been trudging through since August. It's like swimming through mud, trying to get to clear water.

I know that the coming year which is fast upon us will be full of more difficult times and holds a future that I cannot look toward with any hope, except the shred I hold that we can get through it intact physically, mentally, emotionally and spiritually. I know that it will get worse before it gets better, but I know it is possible to get through it--forever changed, but at least intact and still able to live life and find some happiness even if seems impossible at times. I also hope for the continued love and support that all of you have shown us. We wish you all a beautiful New Year of 2006, filled with love and peace.

Love,
Karla

12/19/05

Theo is home and doing very well. We were discharged on Saturday night and got home around 8:00 p.m. He slept all night and most of Sunday as well. He seems to be doing ok with the pain and we're keeping his morphine on about a four hour schedule. We see Dr. Haynes (the surgeon) on Wednesday for a check up and to make sure that everything is as it should be.

Having the tube removed from his nose has already made a huge difference in his comfort level. His breathing is easy now and without that labored sound it had. He hasn't gagged or coughed at all and I'm sure his throat must feel better. And once the site heals around the tube, I think he will feel even better. Right now we have to be careful not to jostle him too much and be very careful when changing his diapers, holding him or moving him. But as long as he gets his pain medication regularly, I think he will be ok. We will probably start backing off the morphine to every 6 hours tomorrow and eventually we'll go back to giving the methadone three times a day and morphine only when he is very agitated. Prior to the surgery, we were only giving the morphine once or twice a day with the methadone schedule.

I've been thinking about the stress of the whole surgery day, with Dr. Haynes not coming to talk to us, the residents forgetting to put in an order for his medication before surgery to keep him comfortable, and I wonder whether it would have happened if Theo was a child without a terminal illness. I don't know whether it would have been different, but I think it would have. I'm only speculating and fully aware that I am severely biased, but I think it makes a difference. I think overall the medical community has a very hard time dealing with those who are dying. When they are powerless to heal, when all their efforts to eradicate the disease fail, I think the tendency is to move on to those patients whom they can heal. I think it is much easier to be less invested, or to "forget" about a patient's family waiting to hear about the results of a surgery which will not heal their child, but only make him more comfortable--which is not a small thing, it's quite a lot, in fact. I have heard nothing but good things about this doctor, particularly his bedside manner and the way he deals with patients and their families, which is why we chose him to do Theo's surgery on Friday. To forget about us, to fail to update us on how the surgery went, how Theo was doing, where he was being moved and when, seems very out of character compared to all I had heard.
I wonder if this situation is more of a general reflection on the medical community and society's discomfort with death in general and particularly the death of a child. It's not something anyone wants to talk about. When I do talk about it, if I happen to feel comfortable enough to bring it up or if someone asks how he is doing--and it's never a simple answer--and I tell them the prognosis, they immediately get very uncomfortable--even when they already know. Initially they are always concerned and sympathetic but once I say that he is dying or tell them how long we have with him, they look scared and uncomfortable, and steer the conversation to another topic--How Jamie and I are doing, whether we need anything, how work is going, whatever. And then there are those people who insist that I "shouldn't say that", that I should "not lose my faith" and that miracles can happen, that he will be healed and other things. I know some people believe those things, but other people say those things because to talk about the reality of the situation is too stark, too painful, too unfathomable. Even in the hospital, the discomfort on the faces of some of the nurses and doctors is evident when we talk about the prognosis and why we have made certain choices. I know, better than anyone, how terrible it is to think about--it isn't just any child dying, it's my child--but I also need to think about it, to plan for him, to come to terms as best I can before it actually happens. Even though I know that no matter how prepared I try to be or think I am, I may just fall apart--I don't know what it will actually be like when it happens.
I wonder how different all this would be, if death was something that was accepted as part of life in our society, as the sacred passage that it is and what it would be like if we weren't so afraid to talk about it. Dying patients (of any age) and their families should be made to feel just as comfortable and be treated with the same importance and respect as those patients with illnesses can be treated and healed. Don't get me wrong, we have been very blessed to have many wonderful people helping with Theo's care who are comfortable with us and our situation and who are incredibly supportive and understanding--our home health nurse Donna (who is just wonderful and loves Theo so much), Dawn with Noah's Children Hospice care, Dr. Ward, several of our oncologists and the nurse practitioners there, our PICU nurses--any many people in our personal lives who let us talk about it and sit with us through it--but a great many of the health care professionals who have been in and out of Theo's life and many, many people outside the medical field are very uncomfortable around us or would just prefer not to deal with it. And they don't have to, it's just something I think about. Even as I write this I feel the need to aplogize for being morbid, for offending anyone, or making anyone uncomfortable. And I wish I didn't feel that way.

Anyway, I will keep you updated---as always, keep us in your hearts.

Love,
Karla